You Can Speak For Your Child (Patreon Version)

Posted on September 1, 2022 by Thomas

This is a (very slightly) modified version of a post I put on Patreon.  There is more on this topic elsewhere on the blog, and still more to come.  This is an important topic to me.  I want you parents to know that I stand with you.   It isn’t that I just want to say, “We’re not all like that,” I want to prove it.  Hopefully this piece below will help with that.

Today I want to talk about speaking for your child and why it is okay to do that.

This really isn’t all that difficult. You are the parent. You can speak for the child. If you have legal custody of your child, you can (and should and even must) speak for them. Not only that, it is your responsibility as a parent. Speaking for your child does not make you a bad parent, it is not speaking for your child that makes you a bad parent. Your job as a parent is to protect your child. This is what a good parent does.

No one knows your child better than you do. If you gave birth to (or adopted or otherwise have) this child, if you raised them, if you love them, who else has that right?

I know you are being told you have no right to speak for your child, this just isn’t true. You absolutely do. Custody alone gives you that right. No stranger on the internet can take that from you just because they said so.

Now this doesn’t mean your kids can’t speak for themselves, indeed they can if they are able. I mean I can’t really blame them if they speak and say they’d rather not have the vegetables during dinner. (Of course at that point you as the parent can speak for yourself and say they eat them anyway or no cookies for dessert if you so choose. On a more serious note, if they are able to speak for themselves, please consider allowing them that.)

That out of the way, not only are you are being told that you cannot speak for your child, you are also being told that only a small and specific group of strangers on the internet can speak for your child. Strangers who not only have a proven dark history of delight in cruelty, but who also do not know the first thing about your child.

For instance…

How old are your kids?

When is their birthday?

What is their diagnosis?

What kind of medical history do they have?

What medications are they on?

What kind of symptoms are they experiencing?

What is their bedtime routine?

What is their favorite color?

What is their favorite TV show or DVD?

What calms them down when they are frightened?

Who are their friends?

What do they like to do during the day?

Do they have an IEP?

What is in the IEP?

Is the IEP being followed?

Is there any violent or inappropriate behavior?

Do we know the reason this behavior is occurring?

Do they have any diagnosed co-occurring conditions?

How are those co-occurring conditions being managed?

Strangers floating around out there on social media don’t know these things. How can they effectively advocate for your child? And being that you don’t know them and they are making demands, would you even trust them with this?

As I have said before (and I repeat it yet again because I cannot stress this enough) advocacy requires that you look at everything. You cannot get on social media and start making demands about people and situations you know nothing about. That way lies madness and is doomed to fail. I spend time with the family and with the child, with the teachers and with the therapists. That information I am given, sensitive and delicate as it is, this is needed for effective advocacy. The advocate must know the history and the needs of the child they are advocating for, elsewise the advocacy itself will not be successful or effective. The advocate cannot be someone the family has never heard of making unreasonable demands while hiding behind the internet. That will not in any way help you or your child. That will only create a lack of trust which will keep you awake at night. You don’t need that.

Advocacy, by it’s very nature, is an intimate thing. Mutual trust between the parent and advocate is absolutely essential to success. Mutual trust between the advocate and the child also helps, that will require trust from the parent. If the parent does not trust the advocate, the advocacy cannot succeed.

Most of the time I was able to leave the child and the family in a better place than they were when I arrived. The reason I was mainly successful is because I didn’t go into this blind. I know every child is different. Just because I was once a child with autism, that doesn’t mean I was your child with autism. I know that even among those with autism, I am unique. I know that what I needed to do in that work was not what would be right for me, but what would be right for your child.

These are two very different things. Anyone who believes all autism is the same and that they automatically already know everything there is to know about your child because they themselves have a diagnosis (be it real or imagined) just isn’t worth your time.

How can you advocate for an effective IEP without knowing the specific educational needs of the child? Just because I had educational needs once, that doesn’t mean your child’s needs are the same as mine.

How can you advocate for effective medical treatment if you don’t know the child’s medical history and diagnosis? Just because I have a medical history and diagnosis, that doesn’t mean your child’s history and diagnosis are the same as mine.

How can you advocate for effective therapies when you don’t know the child’s therapeutic needs? Just because I had therapeutic needs, that doesn’t mean your child’s therapies are the same as mine.

See a pattern here? One child may benefit from Occupational Therapy, one may benefit more from Speech Therapy, one may even benefit from some form of proper and appropriate ABA. One may benefit from a combination of any two or all three. One may benefit from something else. Every child is different. You need to know them (and you also need the right kind of training and experience to understand how to accomplish effective advocacy) before you do anything. Don’t you believe some stranger on the internet can do all of this for you just because they said so. Your child deserves better than that.

And so do you.

If someone you don’t know (or even someone you do know) actually tells you that you have no right to raise or speak for your kids and they do, the only response is to block them immediately. You don’t need that kind of bullying and BS in your life. You have enough to deal with as it is. The only possible way that can be valid is if they have custody of the kids and you do not. Those two conditions must be met for this to be true. So if this isn’t the case, block them and move on.

If all they are is someone who woke up one day and proudly diagnosed themselves with autism, you absolutely need to look elsewhere. If they are an established professional advocate, autistic or not, and you are looking for an advocate, you can consider it. But you need to do your homework. You need to ask the tough questions and they need to be willing and able to respond with answers. Also check any web site or social media pages they have to see what kind of experience they have and that they are right for you.

Keep in mind (and this is important) this is your child’s life they are messing with. You cannot get much more sacred than that. Protect your children from those who would do them harm.

I have nothing to hide. I have had my good and bad moments of advocacy. I have improved the lives of many, saved the lives of a few, and yes there were a couple along the way that for whatever reason I just wasn’t able to help at all. I freely admit to all of this. If someone wants to hire me, I’ll answer their questions and I’ll be honest. If they don’t think I am the right fit, they can look elsewhere. You as the parent need to trust your gut. If you think I’m the wrong person for your particular situation, there’s a real possibility that I am. If you think I’m right for you, we can talk.

If you feel you need an advocate, the most ideal way to find one is to get a referral. Ask at a local support group meeting or ask a friend you trust who they had and if they were happy with them. You can also ask one of your child’s teachers or doctors or therapists. They may be able to give you some suggestions for someone near you who knows what they’re doing.

Or – you as the parent can speak for your child yourself. Consider trying this first, then consider an advocate if that doesn’t work out. It won’t always. Sometimes parents are too close to the situation. That’s okay. That’s why advocates are there.

So – having established that you actually can speak for your child (and if you have legal custody, you absolutely have the right, no matter what any internet strangers say), the next obvious question is: how do you speak for your child? You want to do it in a way that is effective and that will benefit your child, yourself, and your family. And you want it to be appropriate to your child’s wants and needs. So how do you do that?

I’ll get to that. I promise. Stay tuned.

— Thomas

Posted in Advocacy, The Actually Autistic | Leave a comment

Speaking For Your Kids

Posted on May 23, 2022 by Thomas

I want to take just a moment to address something I see happening out there.  I have touched on this briefly before.  I want to expand on this and, for those uncertain (because some of you are), let me clarify for you.

You, the parent, have the right to speak for your kids.

Taking it even further – not only do you have the right, you also, as the parent, have the responsibility and the privilege to speak for your kids.  Speaking for your kids is basic and fundamental Autism Parenting 101.  It’s a requirement.  It’s part of the job description.  It is literally what you signed up for when you decided to be parent and raise a child.

But there is also someone who does not have the right to speak for your child.  That would be (among everyone else who is not that child’s parents or guardian) the stranger on the internet.  

Yeah – that includes me.  I cannot speak for your child.

Some of you are being told otherwise.  You are being told by those same strangers that you have no right to speak for them and they do.  

They’re wrong.  That’s not how this works.  I will explain why.

Their claim is they can speak for your kids but you can’t because they have autism but you don’t.  What they need to understand is they are not responsible for raising your kids.  You are.  They are not paying out of pocket to provide food, clothing, and shelter for them.  You are.  They are not sending them to school or attending IEP meetings for them.  You are.  They are not taking them to the doctor or to therapy.  You are.  They are not getting them dressed in the morning.  You are.  They are not preparing dinner for them every night, giving them baths, and putting them to bed.  You are.  They are not even the ones wiping their butts.  You are.  

Bottom line:
They do not have custody of them.  You do.

All of that is you.  And you aren’t doing it because you need to, you are doing it because you want to.  You are doing it because you love your child.  They don’t know even the first thing about your child.

For instance…

What is your child’s favorite color?  What is their bedtime routine?  What do they like for breakfast?  What is the best way to calm them down?  What is in their IEP?  Is the IEP being followed?  Who is their doctor?  What is their diagnosis?  Do they have any co-occurring diagnoses?  What medication are they on?  What are the dosages of those medications?  Do they have any allergies?  

Do strangers on the internet know these things?  Do they know your child?  Do they have a right to speak for them?

The answer to those questions is NO.

The person who speaks for the child is the person who has custody.  The vast majority of the time, that will be one or both of the parents.  It will not be some random bully out there in the ether somewhere.

Now understand there is an exception to all of this, someone else can speak for your child if you as the parent give them the permission and the authority to do so.  The mother, the father, or both.  If not them, then it must be a legal guardian or nobody, because nobody else can give that permission.  (There’s also court orders, that’s beyond the scope of this article.  We’ll set that aside for another time.)  Random people somewhere on the internet certainly can’t just give that permission to themselves as some of them seem to be doing.  They exceed their authority.  What they are doing to you and (even worse) to your child, they have no right to do.  Please be aware of this.  You do not need to listen to them.  You do not need to allow them to speak for your kids.  That is your job, not theirs.

The example I use here is IEP meetings.  As I have mentioned before, I have done more than my share of IEP meetings over the years.  I have gone to these meetings and I have spoken for the kids.  I have been their voice.  I did this because the parents gave me the authority to speak for their kids for the duration of the IEP meeting.  Once the meeting was over, that authority was rescinded and I was no longer able to speak for the child.  This is as it should be.  

There are some things to keep in mind here.  I was not just some random stranger on social media in some other city, state, or country.  I was there, in person, I prepared for the meetings.  I met with the family.  I asked the parents questions.  I looked over educational and medical records, and prior IEPs.  I worked and played with and got to know to the kids to some extent.  The parents trusted me enough to do all of that.  I understood the weight and the responsibility of this as well.  I knew I had to leave my own personal beliefs and politics at the door.  I wasn’t there to do what was right for me, I was there to do what was right for the child and for the family.

I was not just someone the parents didn’t even know, and at least one of the parents was always there with me in the meetings.  If I said something they didn’t agree with, they were welcome to correct me.  Once in a while they did and they were right to do that.  They always had the final word.  It was my job as the advocate to understand and respect that.  The parent always overrules the advocate.

Whatever it is you have hired the advocate to do, you as the parent or guardian have the final say, the last word.  So long as you have legal custody, you always have the right to speak for your child until the child becomes 18 years of age.  Longer if you obtain a guardianship.  

Do you see what I am saying here?  No stranger from the internet can speak for your child just because they said so.  It is utterly ridiculous for them to think they can.  

Here’s another example.  Let us say (hypothetically speaking, of course) the unthinkable happens and your child is naughty in some way.  Here come the cops knocking on your door.  Who’s going to speak for your child?  That person on the net in some far away place you don’t even know, or you?  And who is the officer going to listen to?  Them or you?  Who is going to have to pay for any damages?  Them or you?  Who may need to appear in court to answer for your child?  Them or you?

So who speaks for your son or daughter?  Them or you?  

Taking it even further, who knows your son or daughter?  Them or you?

It takes more than a diagnosis (or claiming a diagnosis) to be an expert on something as complex as autism.  If one has been properly diagnosed, and if they have any level of self awareness, they may be an expert on their own autism.  I will give them that.  But no two people with autism are the same.  Not understanding this simple, fundamental fact about autism immediately disqualifies them from any claims of expertise.  

Now the reason I am writing this obviousness is because some parents have come to me with some confusion over who can speak for their kids.  I know certain people can be persuasive, but they’re wrong.  They are flexing muscles and trying to look important when they just aren’t.  

What I am saying here is when they tell you that you have no right to speak for your child and they do, you can tell them where to go and what to do with it.  

You can tell them where to shove it.  

Really.  You have my permission to do that.  If they don’t like it, they can take it up with me.

And block them.  Definitely block them.  Even if it’s me.  (But I would never tell you that I can speak for your kids.  I know better.  I take advocacy seriously.  If I ever do, you can just tell me where to go and block me and I will deserve it.)

I am hoping this clears up the confusion.  Note that if your kids can speak for themselves, it is of course best to allow them to do that if the situation allows it.  If they can’t, no stranger on the net can speak for them.  You the parent can.  They’re your kids. Not theirs.  

Please don’t let them tell you otherwise.

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Having Asperger’s Doesn’t Make You a Nazi

Posted on August 11, 2021 by Thomas
Over the past thirty years or so I have had occasion to be asked to make various contributions to the cause of autism. Some of them I am more proud of than others. Some of them I talk about more than others. Some of them I was paid for more than others. All of them contributed to where we are now with the disorder. Unfortunately this includes a certain movement in the cause, and for that please believe me when I tell you I am deeply sorry. I am working on a post about that. I will post it here if I can ever get it to the place where I am happy with it. I am not sure I can.  Even if the movement was not my fault.

That is a story for another day. Today I want to talk specifically about Autism and Asperger’s Syndrome.

Something I don’t mention often (because to me it wasn’t all that monumental, not until now anyway) is many years ago I contributed to defining the difference between these two things and to the understanding of what those differences are. Outside of royalties for SWCTL, I was paid more for this than I have been for anything else I have ever done in autism. The check I received for those services ran well into the thousands for just a few days of work. I am not sure I deserved it, but I am thankful it was given to me.

So having been there and having been a part of that, let me just say this.

There is no difference.

The problem of course is it doesn’t end there. That would be too easy and as we all know, nothing in autism is ever easy. So you can say there is no difference, and that would be the truth, but that doesn’t mean there really is no difference.

Indeed there is a difference between Autism and Asperger’s Syndrome. They are not the same thing. One example I can give you (and I remember this because the discussion was fascinating) is the motor skills of the person with Asperger’s function a little differently than those of the person with autism.  (And of course there is that whole obvious language development thing.)

Now it is important here to note that the keyword in the previous sentence is “a little.” Yes those motor skills differences are there, but they are subtle. Very subtle. Unless you are involved with autism to the extent that people like me are (and yeah that includes a lot of you reading this), there is no difference at all. That is how minuscule the difference in those motor skills are. The same goes for all the other differences as well. They exist, but that’s it. They really don’t mean anything other than a pathway to a clear diagnosis. Once that diagnosis is made, to any average anyone on the street they may as well have level 1 autism because that’s how similar they are to the average layman.

I bring this up because all of this has apparently changed. I am seeing that now there are much bigger differences between the two and no one can possibly consider them the same thing anymore.

When we discussed it that day, when we defined the differences, it was the day after Jacqueline Kennedy Onassis died. You will recall that goes back to 1994. (Meaning we discussed it starting on May 20th of that year, to be exact.) Things do change over the course of time as more information becomes available. Asperger’s has changed as well. Because now, in the year of our Lord 2021, if you are diagnosed with Asperger’s Syndrome, you are automatically given, along with the various symptoms of autism, the extremist and supremacist ideology of the Aryan Nation. Or, to put it another way, if you have Asperger’s Syndrome then you are a pro-eugenics ableist nazi. Except for one thing. You aren’t. Not really. Not even close.

There are a lot of people out there on the net claiming if you say you have Asperger’s, you are also a pro-eugenics ableist nazi. They were not there in the room that day. I was. And as someone who was there, I am telling you those people are not speaking truth. Further, I state here, now, hand on my heart, for the record, in writing, in front of you, and before God and everybody, that I would absolutely be willing to swear to this – under oath – in a court of law. I stand ready at any time should it ever become necessary. That’s how certain I am of this. So help me God.

The word “pro-eugenics” was never uttered once in those discussions. The word “ableist” was never uttered once in those discussions. And the word “nazi” was most assuredly never uttered once in those discussions. What they are telling you simply is not truthful. It is misinformation.

But all of this does lead to one obvious question. If being diagnosed with Asperger’s doesn’t mean you are a pro-eugenics ableist nazi, then what exactly does it mean? Well, I am glad you asked. Because I can answer that.

What it means is once upon a time, a valid, licensed, qualified diagnostician diagnosed you with Asperger’s Syndrome and are now considered to have level 1 autism.

And that’s it. That’s all it means. Nothing else.

You are not pro-eugenics. You are not ableist. You are not a nazi. What you are is an individual who experiences certain neurological anomalies beyond the norm in such a way that classified you at one time as a person carrying the diagnosis of Asperger’s Syndrome.

Again, that’s it. Nothing else. No nazi. You do not need to click your heels. I promise.

So if, once upon a time as in above, someone diagnosed you with Asperger’s Syndrome, it is okay to say so. You are not telling people you are a nazi, what you are doing is telling people you were once diagnosed with Asperger’s Syndrome. If this did happen to you, all you are guilty of when you tell us is speaking the truth.

Speaking the truth is nothing to be ashamed of, no matter what those people tell you.
Posted in The Actually Autistic | Leave a comment

Conforming With Autism

Posted on August 11, 2021 by Thomas
This just showed up on my FB feed.



I don’t really remember if I ever did this or not. I do recall that sometimes, even today, I will pretend to agree with someone on something like say politics if I am not in the mood for an argument. I don’t like compromising myself like that but I have found sometimes if you find yourself in the company of an extremist, it might be best to just go along with them and look for a way to out of there as soon as you can. Certain kinds and types of people just aren’t worth the effort. Some are worth all you can give them. Still others are worth even more than that.

That exception aside, for the most part as I have gotten older, I have also become more comfortable with who I am. I am Thomas, take it or leave it. If you don’t like who I am, phooey on you. Believe me I don’t need your hero worship. Been there, done that, and if no one ever does that to me again, that’s just fine with me. On the other hand if you want to be friends, that’s fine with me, too. But be warned I am picky about who I hang with. After my experience at Lion of Judah (and one thing in particular that came out of it), I am not about to have toxic people around me. Not anymore. Chronic illness adds to the danger in that for me. But if you are a decent person, there is no danger for either of us. So I’m there. Count me in.

There are a lot of people out there who don’t get me. I have learned to be okay with that. I have come to see how special the people who do get me really are. Not just with me, but with everyone else. That’s the kind of person I want to be around. Someone who is good and kind not just to me but to all those around them.

As for this inquiry, the need for acceptance and to fit in somewhere can drive a body to things. Look no further than the Actually Autistic movement as an example of this. I am certain that bullying is born of desperation to belong. Once you figure out how to accept yourself (and it can be difficult, it was for me), things like this don’t mean as much to you because the things like what I just wrote above become clear. That’s my own personal interpretation of this. I think in this particular case, autistic or not, it all comes down to self esteem.
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Restraints and Autism

Posted on August 9, 2021 by Thomas
Let’s talk about restraints. (Full disclosure, I have done time in restraints. I have been bound.)

Restraints in autism are controversial and for good reason. I can tell you from personal experience they are unpleasant. There are many kinds of restraints. Aside from the obvious, there are also chemical restraints, and restraints such as a jail cell. Full disclosure, I have been restrained this way as well. But no it wasn’t jail.

When it comes to autism, some people say sometimes restraints are necessary as a last option. Others say they should never be used at all no matter what. Breaking from the pack, the JRC doesn’t seem to have a problem with them at all. In my own work, I did reluctantly use them (or approve their use) once or twice. It was not something I wanted to do having gone through my own experience, yet I truly didn’t see any other option at the time. I was looking at it mostly from a safety perspective. Not only the person’s safety but the safety of the people and property around him. As I have said before, safety is paramount. That’s basic advocacy 101. I got them out as soon as it was safe to do so and to this day I really wish things had gone differently.

In a perfect world, restraints would not be necessary. They would never have been invented or even considered or thought of in so much as a passing flight of fancy. But we don’t live in a perfect world. We live in a world where sometimes people get violent. This can include people with autism. I can give a real world example. Just after SWCTL was released, I spoke at a conference for the Autism Society of illinois and I got to know a mother and son in Fox Lake. I spent a lot of time with them. It was kind of like that situation below in New York in that I was invited to the home for a few days. (That happened a lot in my travels. I have more stories to share about this at some point. For instance remind me to tell you about the nice lady who spilled coffee all over the brand new Schoolhouse Rock shirt I was wearing just before I was scheduled to keynote a conference in Maine. And that’s not all. I got 30 years of advocacy stories yet to tell you. I really need to start posting them.) In this case, I was able to keep going back to visit over the years because I could drive there. The son was young and wonderful in the beginning. He was severe and didn’t talk much but he found his own ways to communicate and he was calm and happy (always happy – always happy) and just lots of fun to hang out with and be around. Puberty hit and all that changed. He grew like a weed and turned violent. The only other one there was his mother. This once innocent and happy boy outgrew her and started beating the crap out of her. There was absolutely nothing she could do. Eventually he ended up in an institution. It was a bad situation all around. I could give you a few real world examples from my own sordid past as well, but I will spare you (and myself) the agony.

A more current controversy is restraints in the classroom. There was an incident in VA back when I was living there in which a child with autism was in a classroom that had a small time out room. The child misbehaved and the teacher placed him in the room and locked the door. When the parents found out about it, they went ballistic, screamed at the school, and called the media. The media had a field day reporting it on the local news.

Like with so many other things involving autism, I have been on both sides of this, so I am in the unique position where I can see both sides of this. I don’t like them, and I really wish we never needed them, but if the individual is violent and not responding to anything else you try, what other option is there?

If any of you have experience with restraints, or if you have an alternative to restraints when all else fails, please post in the comments. It is unlikely I will ever have occasion to have the authority to use restraints on someone ever again (and believe me I am well okay with that). But if I do, I would love to have options.
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Great Guardians

Posted on July 27, 2021 by Thomas
Let’s consider guardianship.

One of the controversies with guardianship is people (well, some people, we know who they are) are claiming that having a guardian takes away your basic civil and human rights.

And I have been there. Anyone who has read Soon Will Come the Light or who knows my history knows that in my teens, I was tucked away in a cutsie little corner of the world, far away from everyone else, where I had no rights at all and every decision was made for me. I have not forgotten this, or how it felt. So please understand the perspective where I am coming from here.

Also understand we are not talking about your average, everyday autism here. I am asking about this in relation to the severe cases. The ones that are hidden away that no one sees.

The NCSA position on guardianship can be read here.

Decisions are a part of life. Indeed, this is pretty much what all of life is, making decisions. We are faced with a choice, we ponder the evidence available at the time to the best of our ability, and we make a decision. Then we hope it was the right one because whatever it was, big or small, we must live the benefits or consequences of that decision. (This is what we did with the puzzle piece. We did what we felt was right based upon the information and knowledge we had at the time. As of this writing, I still feel it was the right decision.)

Some decisions are not so important in the big scheme of things. For instance, a little later I will open my freezer, look at what’s there, and make a decision on what to have for dinner. I’ll likely forget all about it in the coming days. Other decisions are much bigger. Employment, housing, marriage, kids and how many, how we manage money. These decisions will affect us for the rest of our lives.

There are absolute requirements for making decisions. These include a certain level of intellect, maturity, and appropriate cognitive and behavioral functioning, among other things. There is absolutely no way to get around making decisions in life. It must be done. If an individual is not capable of making a decision on their own, someone else must make that decision for them.

All of us want to make our own decisions. All of us want to find our own way. I get that. Really.  Because those rights were once taken away from me for an extended period of time (as in years) through no fault of my own.

Any advocate (well, any good advocate, heck even any semi reasonable advocate) will tell you safety comes first. Safety is paramount. Nothing is more important than the safety of the individuals. And not only the individuals, but also those around them. It is truth that quality of life ranks second behind safety. There are people who simply do not (or for whatever reason they just choose not to) understand this. Safety must come first. Once that safety is established, then we work on quality of life. This is the way of effective advocacy. (Note that not only must quality of life come after safety, it also does come after safety. Once the safety has been established, advocacy is all about quality of life. There is no higher priority than this. Are you not where you should be or where you want to be? Let us help you get there. That’s advocacy in a nutshell.)

But guardianship is far from a perfect solution. It can be – it has been – abused. I have experienced this. It was abused during those years in my teens. When we assign a guardian, or when a guardian is assigned for us, we are operating on the assumption that said guardian will operate in the best interest of the charge. This is not always the case. It is a position that is easily abused. And there are many kinds of abuse. Physical abuse, emotional abuse, spiritual abuse, sexual abuse, financial abuse. (I have experienced many of these over the years. Things have settled down for me these days and I no longer feel I am being abused in any way. (Because I’m not.) Others are not so fortunate.

As parents, you want your kids to be happy. You also want them to be safe. You cannot guarantee that safety with an external guardian. But to finish that thought – the unspoken part – you also can’t guarantee it with you. Things happen. Sometimes we just don’t see them coming.

The one question I was asked more than any other, most of the time accompanied by tears, was, “What will happen to my child after I am gone?” Even 30 years later, I don’t have an answer. You can’t possibly know. But you can prepare. Trust funds and IRAs and saving accounts and guardians and living arrangements and lots and lots and lots and lots of other tedious things to go through.

Because you love your child.
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Two Years of Life on Wheels

Posted on March 20, 2019 by Thomas

This is an anniversary for me. Two years of life on wheels.

I posted about this one year ago, and I see I have only written two blogs since. I must do something about that.

The wheels have weathered the year well. I am sitting in them now. They are just a bit more beat up, a sign they are actually being used and I have at least somewhat of a life. But they still look good. There is an addition, a clip on detachable motor in the back, making it a power chair when needed. So far, that isn’t often. It is called a SmartDrive. I will review it here in the blog at some point. You can see it in the pic below.

When I first took these two years ago, I was told the way to use them was to consider them a part of me. When you are not in the wheels, it is just a wheelchair. But when you are, you don’t just sit in it. You allow it to meld into you and you become one with it. You and the wheels are not separate, you become a single entity. You are one. I have embraced this philosophy from the beginning and it has served me well. When someone else takes the wheels out of the trunk, I tell them, “Be gentle with that. It is a part of me.” And I mean it.

A few months ago I learned that apparently others consider it a part of me as well. Maybe not in a good way. I was at a church and I was called into the pastor’s office. She told me I was “getting too close” to the other members of the church. By “too close” she meant I was physically too close to them. I didn’t understand this. I am sitting in a wheelchair. I cannot get as close to someone as I have seen so many others do. They stand right there next to each other, almost touching.

But she told me I was anyway. She told me that when I scoot in with the wheels, they felt I was “too close” to them. It made them uncomfortable. Then she told me she felt the same way. She told me that if I wanted to talk to her, I was to approach her from the side, not the front. And then she demonstrated. But what she demonstrated actually made me physically closer to her than I would have been otherwise.

I have since found another church (more like a fellowship, actually, but not the freemasons or some such) where they are not so anal and insane and no one has a problem with me.

Some people are still uncomfortable with wheels.

I have also learned to beware the paint job. It doesn’t take much for the paint to scrape off of these things. That can make them look real bad, read fast. But I have so far managed to avoid that for the most part by being a bit more careful than I really want to. I would rather just wheel and not have to worry about it, maybe one day we will be able to do that. (Are you listening, Tilite?)

The tires need to be filled with air once or twice a week because they are high capacity (I keep them around 80psi) and temperature changes make them deflate faster. There are several kinds of tires you can get, some of them are solid and do not require air, but the ride is not as smooth. I am using a portable air compressor I found at Lowe’s to fill the tires easily. I have decided that the comfort of the ride is worth the hassle of filling them with air. Sometimes sacrifices must be made. I usually fill them on Saturday afternoons.

As far as me personally – like with last year, the reasons I am sitting in this can still wait for another day. I have deteriorated a little bit since last year, but a lot less than I thought I would. I am still around. Still alive. I know about alive and kicking, but at least alive.

More on this next year…

Posted in Life on Wheels | Leave a comment

Letting Go of God?

Posted on June 27, 2018 by Thomas

Yesterday I went to a meeting at a church where I saw Julia Sweeney’s “Letting Go of God.” This was the second time I have seen it.  I saw this a few years ago back in Virginia. This time it was different.

Last time I was not facing my own mortality. As my health continues to spiral downward, I have no idea how much time I have left. As I watched this, I realized I was asking the same questions. Who am I? Why am I here? Where am I going? And of course the big one, what will happen to me after I die?

I realized also that losing my belief in God meant I didn’t believe in anything. I thought that was profoundly sad. Was I to go to my grave with a belief in … nothing? I didn’t want that.

I don’t want that.

One thing I have in my favor is that I have already made my mark on the world. I have changed it for the better just a little bit and that is enough for me because it is better than most people get to do. I kept a lower profile than Temple (and that was by design), so I am not sure I will even be remembered. That’s okay. I did it, and that is enough. I have made a contribution. Whether I die today, tomorrow, or ten or twenty years from now, my life has had meaning. I don’t need to think it has not.

Acknowledging that and setting it aside (a comforting thing to do), what exactly do I believe in? I pondered this as I was putting the wheels in the car in the parking lot to go home. Do I have any beliefs? Is there anything I know I truly believe in? Is there anything I have faith in? If it isn’t God, then what is it?

I drove out of the church and pondered this. If one has a faith, does it have to be in the supernatural? Must you believe in a god of some description to have faith? Or can you maybe believe in something else? And if I believe in something else, then what is it?

As I was turning onto 315 N, it came to me. Yes, there is something I believe in. I believe in connection. I believe in community. I believe that a relationship with another, whether romantic or platonic, can be magical.

Do I believe in magic? That was my next question. I decided maybe I do – if I can find a definition that works for me. It won’t be Jeanie or Samantha. I do believe in illusion, but illusion is not magic. Illusion is physics. That’s why I can believe in it. Because I believe in the value of science. Always asking questions, never giving up, following what we know to be the truth, wherever it leads – whether we like it or not. What is actually real is more important than what we want to be real. I believe that as well.

I believe in kindness and compassion. I believe things like where you are from, who you love, or the color of your skin – all of these things, while they are important, they are all on the surface. Underneath all of that, we are all the same.

We don’t need a border wall. We don’t need laws prohibiting gay marriage. We don’t need to yell at the poor that they are lazy and fraudulent. What we do need is to understand that we are not all the same and that is okay. We need to be celebrating the beautiful and wondrous diversity of humanity.

Some people, many people, are unable to do this. They are so busy screaming that gays and immigrants are going to hell that they have forgotten how to love their neighbor.

That’s something else I believe in – loving my neighbor. Not because Jesus said so, but because it is the right thing to do. That includes the gays and immigrants and Muslims and Mexicans and the poor.

I believe it is okay to speak against hate. Not only is it okay, but it is something we must do. As long as we remain silent, the hate will continue. Speaking against it, writing against it, marching against it, voting against it, all of these things and more are in our best interest. We cannot – we must not – let hate win.

For the remainder of my life, I will have a dark cloud of uncertainty hanging over my head. I go to sleep every night not really knowing that I am going to wake up in the morning. I could take a turn for the worse at any time. And yes, this is true of all of us, but it is more true for me. And when you are in that kind of situation, it changes you. I have always felt this way about things, but it is only recently that I have really started to live like it.  I am trying to make sure that my decisions and my actions always reflect these beliefs.  Sometimes I fail.  But from now until the end, however close or far away that may be, I will not stop trying.  It is the highest priority I have.

One other thing I believe – you do not need to be a christian to be a good person.  You do not need Jesus or the Holy Spirit to guide you.  In fact lately if anything that appears to be a hindrance.  What you do need is morals, values, character, and integrity.  No relation to religion.  The two can go together – or not.  I have seen both.

My thoughts and views on what is important and what is not are radically changing. They are becoming a lot more accurate than they were. I am thankful for this. I may not believe in God, but there are things I do believe in. Good things. True things. Honest things. I will not die believing in nothing.

For if I die, let it be with honor.

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Thoughts on Autism Awareness Month – 2018

Posted on April 2, 2018 by Thomas

Being this is April 2nd (World Autism Awareness Day), I want to post some thoughts on National Autism Awareness Month. I feel qualified to do so as I was in the board room with 14 others when Autism Awareness Month was created. I had a vote on it. I was the only person with autism who had a vote on it. I was the only person with autism who had anything to do with creating it.

That said, for the past several years I have stated that for me, Autism Awareness Month begins on April 3rd. That is true again this year. It makes me angry that autism speaks has turned April into a cash cow for themselves. That is not why I voted for it. I do not have problems with that organization for the same reason others with autism do, but I do have problems with them. Lately they are getting better. Maybe in another two or three years if they get it together I can actually start to support them. I’d like that. The more of us who are on the same side, the better it will be for everyone.

But for now, Autism Awareness Month for me begins the day after, on the 3rd. It continues for the rest of the year.

This year I am seeing a continuation of something I have seen the past few years and it is bothering me more than autism speaks. That would be people with autism (and a few parents) posting memes on Facebook that April is Autism Acceptance Month or today is World Autism Acceptance Day.

No. Just, NO.

First, let me be clear that I am all in favor of acceptance. I have been fighting for autism acceptance since before a lot of those people posting the memes were even born. So it is not acceptance I have a problem with. It is the way they are going about it.

Posting fake memes about a month that does not exist is not going to create autism acceptance. If anything, it will do just the opposite. People will read the memes and say, “Look at those crazy autistics, they don’t even know what month it is. What a bunch of idiots!” That doesn’t help anybody.

What will help create acceptance is creating awareness. This is why we have an awareness month and not an acceptance month. We in the boardroom named it “awareness month” for a reason. We knew that once we had the awareness, the acceptance would naturally follow. If there is not yet enough acceptance, it is only because there has not yet been enough awareness.

See how that works?

From the very beginning, it has been the nature of humanity to criticize and to fear what it does not understand. It is part of who we are. It always has been. The ways and behaviors of people with autism can seem alien to a lot of people who have never been exposed to things like that before. Seeing a young kid repeatedly bang his head against the wall or a pretty girl in her 20’s talk about nothing except Doctor Who for hours on end is not something you come across every day. There are reasons these and the other behaviors and symptoms of autism occur, and what we need is awareness. Once the awareness is there, people will be saying, “I get it. I understand it. I am able to accept it” – and we will have acceptance.

Posting memes demanding acceptance is not going to create acceptance. If you seriously believe it is, you need to go back to advocacy school. What will create acceptance is awareness. “This is what it is, this is why it is happening, this is what we can do about it.”

That awareness will create acceptance.

This is why we have an awareness month, not an acceptance month. We do not need an acceptance month. We need an awareness month.

So if you are one of these people out there on Facebook posting “Autism Acceptance Month” memes, I would encourage you to go out and spread some awareness. That is the only way we will ever achieve acceptance.

Posted in Advocacy | Leave a comment

A Year of Life on Wheels

Posted on March 20, 2018 by Thomas

Starting a new (and simpler) blog with an anniversary.

A year ago today it finally happened. I had been told 20 years prior that it would and I had always believed it was inevitable. That it took 20 years is in itself a cause for celebration.

That was one of the many thoughts that went through my mind at Martha Morehouse Wheelchair Clinic at OSU as I looked for the first time at the wheelchair that would become my new home.

It was sleek, it was stylish, it was sporty. At least as sporty as any wheelchair could be. It was custom built to my measurements. It was forged of titanium and carbon fiber and had a few subtle modifications on it to meet my own unique needs. It was a little over $5,000.00 and insurance was covering 100% of the cost. It was pretty much a gift.

I sit in it now as I write this.

It looked nothing like the low quality, uncomfortable, institutional chairs you find at doctors offices and inside the door at hospitals. I know because I have one of my own. This was a serious wheelchair designed for complete independence. It was built for comfort. This was a chair made for someone who didn’t have much of a chance of ever getting out of it. You don’t spend five grand on something so temporary.

I was in this for the long haul. I realized that as I looked down at it. Yes, I was standing on my own two feet, but it was difficult at best. Realizing it was a one of those rare moments that define your life, I walked over and sat down in it for the first time. It was far more comfortable than I had ever imagined it could be. Yeah, I could easily spend all day in this thing.

The weight, complete with all the wheels and accessories attached, was 37 pounds even. Like most wheelers, I eventually opted to remove the arm rests because they got in the way. (I still have them in the closet.)  That lowered the weight just a bit. It folds nicely and fits perfectly in the trunk of my Audi. I can put it in there and go just about anywhere. The chair is extremely maneuverable and easy to get around in. It is designed so it can get down most aisles and get around corners and tight spaces that a standard wheelchair would never be able to. There is no need to have anyone push you because it is so easy to push yourself. One push and you keep going. (It does have handles to push on it, they fold down out of the way.  Very few people have pushed me.)  This is the chair that everyone who is in a chair wants to have. Quality.

But it is still a wheelchair.

At first I didn’t really think much of it. Yes it was a change, a big change from being on my feet, but I figured that I had already made my contribution to society. I didn’t need to prove anything to anybody because I already had. This wouldn’t be so bad, I thought. Consider this full of hubris Facebook post.

Tomorrow I take possession of the wheelchair and sit down in it for the first time. This would be a life changing moment for anybody. As the wheels were being built, I struggled to come to terms with how I felt about this. It isn’t easy trading in your legs for wheels, and I was feeling conflicted emotions about it that I was desperately trying to work out. But now, as the hour quickly approaches, I know longer wonder how I feel. I know exactly how I feel.

As I have said before, I have had an amazing life.  Some years were spent in the darkest places a person could possibly be, others were lived while soaring the clouds of joy. I have been confined to an area of just a few square feet, and I have experienced freedom that few others will ever know. I have made decisions that have saved marriages, families, and the lives of children, and I have made mistakes that have torn all of those apart. I have celebrated with parents when their children showed the courage find their way home, and I have held inconsolable mothers in my arms as her kids tried to kill themselves. I have basked deep in the glory of what may or may not have been God, and I have had reason to question His very existence. I have witnessed unspeakable horrors, and I have seen unexplainable miracles. I have shivered alone through nights in the cold, and I have fallen asleep cradled in the warm arms of a princess. I have been lost in places others have never returned from, and I have faced numerous demons – staring them down, straight back to the pits of hell.

For someone who has been through all of that, and so much more, life on wheels is, both literally and figuratively, a walk in the park.

Yeah. I got this.

While all of those things are true, it is also true that I did not count on things getting worse over the next year. I do not have such hubris about it anymore, nor am I quite as easy going about it as I once was. I see the future and it looks bleak, indeed.

But I am not writing this to talk about that. That, why I am in it, and the misdiagnosis that lasted 20 years is a topic for another day. I am writing this to talk about some things I have learned over the past year while I have been sitting in this contraption. It has certainly been an education.

The entire illness has been an education. We see people like this sometimes, all of us do. We see people who are in the chairs and who have “personal care attendants” to tend to them. We, blessed to be standing on our own two feet and taking that for granted, look upon them with some measure of pity and we are thankful we are not them.

But now I am them.

First, one of the things that surprised me the most has been other people’s reactions. It is not what I expected. Well, some of it is, like the evangelical christians implying that somehow it is my own fault and all I have to do is tell myself to get over it and start walking again. Or perhaps if prayer has not healed me then it is my own fault because I did not have the proper faith to be healed. That much harm I knew to expect and they have not disappointed me. But other things have been not so obvious.

For instance, aside from the aforementioned evangelicals, I have found that for the most part, people (including non evangelical christians) treat me better when I am in the wheelchair than they did when I was on my feet. I have wondered if maybe it is because I have a nice chair. Would they treat me like this if I wheeled around in one of those institutional chairs? I wonder. I still have it, I may do an experiment someday.

Places like businesses and restaurants have been very kind to me. They have been much more friendly. Yes, a few of them have talked down to me as if being in a chair somehow makes me less smart, but mostly they have just been kind. They have done things like give me things on the house that I know they would not have done if I was walking. I appreciate that. When they take my order, they may smile more, but they usually don’t treat me like I’m stupid. This is a welcome change from what I expected. If they do feel pity, they have learned not to show it. Or maybe because I tend to be bubbly at these places, they see that and respond in kind. Maybe if I was a sourpuss they’d feel more sorry for me and rightly so.

I have had to work harder at not being a sourpuss. The people around me, it is not their fault. I can’t blame them for it. I want to, yes, but it isn’t right and it isn’t going anybody including me.

When you were a once jet setter every weekend and now you are in a wheelchair, that’s a huge (and I mean huge) adjustment to make. Autism on top of that sure doesn’t help. It is so easy to become angry and depressed at just the slightest little thing. That’s because being in a wheelchair makes you angry and depressed. I know there are people out there who have adapted, but a year later I am not just not there yet. I am not sure I ever will be.

It took me several months just to learn how to do a wheelie. It does bring me just a small amount of joy to pop wheelies in the chair. I like doing this, as anyone who has been around me knows. You have to take happiness where you can get it. I also tend to take full and complete advantage of the mobility of the chair. When I am sitting somewhere I move around if I want to. I have noticed some people don’t like that. Tough. One person once even went so far as to tell me he thought the wheelchair was just one big fidget. I could not disagree. For me, that’s exactly what it is. This is likely because of the very comfortable ergonomic push rims that make the chair so fidgety.

There are a few perks that come with wheels. One of them is the comfort of the chair. If I am going out to eat or to a meeting or some other place where I will be sitting, I take the chair even if I don’t need it. I am still, for the moment, capable of walking from the car to the building and sitting down. I can still do that much. I take the wheelchair anyway because I know the wheelchair will be more comfortable than the chairs they provide. It has to be. It was built around me from the ground up.

As a bonus, because it is my personal chair, I am guaranteed a place to sit and to some extent I feel “home” even when I go out. This feeling is important to wheelers because a lot of us get out so infrequently.

Another bonus (the best one by far) is the parking placard. I started with the ones you hang on the rear view mirror, but I was always forgetting to put it on. Somehow I never got a ticket. But I decided to do something about it before I did and got plates with the little wheeler guy on them. I don’t really like advertising disability down the road like that, but I do like that I can park and just leave the car. I have noticed a lot of people leave the placards on the mirror even when they are driving. This is against the law.

I have not yet figured out how to do grocery shopping in a wheelchair. I have seen it done, I have seen wheelers push that little trolley  along in a wheelchair, but I have not yet figured out how to do that. One of the few places I still go without the wheels is to the grocery store. I have not fallen yet, but I have come damn close many times.

There is an awkwardness that comes with a wheelchair. This may be the hardest part of it for me. Most of us are on our feet and when we want to move from one location to another, we just get up and walk there. We don’t think anything of it. It is just something we automatically do because we can.

But wheelers are not so fortunate. Yes, this chair is very good at maneuvering around those tight spaces, but there are still places I can’t go. Or at least not easily. You know how if you see a mens or ladies sign and it has a little wheeler guy on it because it is supposed to be accessible? It isn’t.

You can tell it isn’t because there is a door right there. How do you open the door to go into one of those places? I have not figured this out yet, either! (And WHY is there always a bar behind the toilet? What am I missing? Is that actually helpful? It must be, but I don’t see how? Someone enlighten me, please.)

Getting up and down aisles is not always easy. Neither is getting in and out of buildings. And a whole heck of lot of buildings do not have elevators, so you are totally screwed. These are supposed to be taken care of with the ADA, but they are not. And the ADA itself may soon be a thing of the past.

There is much more I can say and I will in later posts. This one is long enough already.

Happy anniversary to me.

Posted in Life on Wheels | Leave a comment